Wednesday, January 23, 2013

There are so many signs and symptoms of autism, it's one of those things that you ask yourself if you’re looking for symptoms, or, in our case, not looking for symptoms.

We blamed a lot of James' symptoms on him being a preemie and being a twin. He was born 5 weeks early but they say to add 2 weeks to that for twins. There's something that happens to you in the NICU that only other NICU moms understand. One of the most horrible feelings is seeing your baby turn one month old in the hospital and wonder if it was your fault that they were still there. That maybe they're still there because by the time I hit 35 weeks I literally could not breathe and I wanted them out. I regret thinking that every day. I think feeling those things are something that motivated me to use the preemie card, that card was so much easier.

Loving on Daddy when he got home from work

Here's why we didn't think James had autism.

Autism Sign: Lack of Affection

James doesn't lack affection, he has an abundance of it. James has spontaneous affection. Lack of spontaneous affection is one of the most noticeable signs of autism. But with James, if you're holding him he'll hug you and kiss you out of nowhere. Sometimes when he's walking by you he'll stop and grab your face and kiss you. When we're snuggling on the couch he'll turn and look at me and kiss me.

So James doesn't have autism because he loves on us.

Autism Sign: Lack of Range of Emotions

Nowadays the range of James' emotions pretty much goes from happy/content to pissed. But back then, back then being around 2 years ago, you could get James to babble at you and get him to smile. And his laugh. I don't think I can put the sound of James' laughter into words. James could throw a tantrum so wild you yourself start to cry because you can't help and then 30 minutes later when he's calmed down you can make him laugh and you fall right back in love with him. I've warned some people that once they hear James' laugh they will fall in love. It's gotten harder to get that belly laugh but it really is one of the greatest things ever, as you can see in this video.

Plus, I've said it before, the empathy he has for Lily. It's the best if she's upset and crying and then he starts to cry, or vice-versa, and their cries are in harmony, so funny. When they were apart and saw each other again you knew they missed each other from the smiles on their faces.

There you go, James doesn't have autism because he has lots of emotions.

Autism Sign: No Separation Anxiety from Parents

Kisses (and soda) from Mommy

James was so attached to me sometimes I would worry. Eventually it got so that when he got separated from me he would calm down if he knew (or thought) that I was gone. But if he knew that I was in the basement while he was upstairs it was the end of the world.

James doesn't have autism because he hates being away from me.

Autism Sign: Inability to Handle Change to Routine

I said that James hated having his schedule changed because I was so strict with the schedule the first year of their life. You know, feed your twins at the same time, have your twins sleep at the same, stuff like that.

So James doesn't have autism because his routine issues were my fault because I'm anal like that, and it was the only way I could survive.

Autism Sign: Sensory Issues

Preemie James

We said James had such trouble eating because his "suck" muscles for the "suck and swallow" instinct weren't very strong. Him and Lily turned out to have extreme acid reflux and so we blamed that first year of bad eating on acid not because he hated the way things felt in his mouth. Then when James did eat he only ate certain foods because he was picky, and maybe he had sensory issues because he was a preemie. He and Lily both hated fluorescent lights. That was completely blamed on the NICU because they spent their first 5 weeks of life in low light. All of those reasons could be true, or some of them, or autism could have caused all of his eating problems.

But those are reasons why we ruled autism out.

Autism Sign: Delays in Motor Skills

James didn't roll over or sit up or walk or hit other physical milestones because his head was "too heavy" for him to want to pick up (97th percentile for his age). There were also 8 tall people in the house who could pick him up and carry him and they all wanted to because there hadn't been a baby around for 12 years.

Seeing Daddy after 10 days of being apart

So James is lazy and spoiled so he doesn't have autism (here you need to remember that I'm a very sarcastic person, but I did tell myself those things).

Autism Sign: Delay and Loss of Speech

James' first word was when he was about 12 months old and it was "dog". It was Lily's first word and they said it within a couple days of each other and there's nothing wrong with Lily, so it's ok if it was a couple months late. And it was ok that James "lost words" because every time he would lose one he would gain one. Plus Lily never shut up, I mean, never stopped telling us stories.

James didn't have autism because he was gaining new language and just had a bad memory when it came to remembering the old stuff.

Autism Sign: Lack of Social Interaction, Doesn't Respond to Name

James wasn't social because Lily is SO social. She got so excited when people walked in a room, it was easy not to notice him. She wanted attention and to be held. James was content to stay where he was and when you got excited to see him it was pretty discouraging because he wouldn't even look at you. One of James' uncles is deaf in one ear so we blamed his non-responsiveness on possible hearing problems. We got a basic hearing test done and it showed his hearing as normal but they told us that those results aren't necessarily reliable because he was so young.

Somebody (probably himself) put baby in a corner

James didn't have autism because he wasn't social, he wasn't social because he had Lily to be social for him. And James didn't answer to you because he couldn't hear you not because he had autism.

And then there were obvious things. James' tantrums were wild and long. He didn't point which made it even harder to try and appease him. He was OBSESSED with the credits at the end of TV shows and movies. I personally just kinda figured that just how James was but his grandma's, maternal a pediatrician and paternal who had very close experience with autism, noticed these things and kept track.

I feel kinda stupid because you'd think, 1 in 88 kids (1 in 54 boys) have autism, and it's in James' family history… I also figured that my life was such hell at the time because raising twins was hell and that's just how it was. Oh yeah, he has red hair so we blamed his temper on that. When I was little I sure had attitude and I know my hair got blamed a lot.

And the other thing, James is wicked smart. When got him evaluated last August, so basically 2 1/5 years-old, James knew how to count to 12 and count down from 12. He knew his shapes and could identify them. He could draw a circle and a recognizable triangle. Not to mention he was on level 21 of Angry Birds, and there was more than one level with three stars. Most annoying, he knew that if we weren't at home my phone could access Netflix and his iPod touch couldn't and the little snot knew how to turn off airplane mode so he could watch things (and call people, grr) (we deleted the Netflix app). I thought it was cool that he was so smart, not worrisome. In James' diagnosis, a ten page packet that details the reasons why the doctor believes that James has autism and why it is autism and not an Autism Spectrum Disorder, the diagnosing doctor says "intelligent verging on the precocious." That doesn't sound too bad. I'm just glad James isn't some kind of savant cause when that kid learns to talk...

Looking at Mommy's phone

The moral of the story is: if you were to ask me when I started to wonder if James had autism, I really don't think I did. And I also don't think I worried what would happen if James did have autism because I knew we would do ABA just like our close family member had done and James would be fine. Now I don't worry that he'll be fine, I worry that if he's not fine it's because I couldn't give him 40 hours of ABA a week because I couldn't afford it because I didn't work hard enough or fight hard enough.

Then I think about all those mommies out there who don't know about ABA and have to see what I was seeing, my child slowly disappearing into a world within himself and when he came out he was jerked out, he hated it and I didn't want to do that to him so I just had to watch.

Holding hands

And what's worse? In James' case Lily has to watch it too. She has spent more time with him than anyone in the world. Last time I wrote about how he and I have to say goodbye but she does too. I took me about four tries to get through this: Letter to My Neurotypical Child. I hope I never have to say these words to her.

We've been working on James sitting at the table to eat, and it's been a fight. You bring him to the table by saying, "It's time to eat." There are a lot of different responses you can expect from James and on this particular night it was not a good response. But with ABA you're teaching the child to behave the way that their peers do, even if it means using all your strength to keep James in your lap to keep him at the table. It's pretty hard, but this one night, I had to hold Lily in her chair to keep her from going to him.

You get used to holding James down, but I will never get used to stopping Lily from comforting him.

Tuesday, January 8, 2013

I say "Goodbye" to my little boy three times a day. Six if you count the times I say goodbye to him after his ten minute break during his ABA therapy session. Some days it's less, like on Sundays when he doesn't have therapy or the days that he has two 3-hour sessions instead of three 2-hour sessions.

James getting into trouble in the bathroom
(Lily took this picture from the toilet)

I'll admit it, some days I don't mind it. In fact, there are some days when his therapist comes out to get him and I'm relieved. We've been potty training Lily and he gets into everything in the bathroom, and we have to keep the baby lock on the bathroom door so he doesn't get in there. Poor Lily has had some accidents because she can't get into the bathroom.

But there are some days, lots of days, when it's the hardest thing in the world. Today was one of those days. James' sessions are normally 50 minutes of work, then a 10 minute break and another 50 minutes of work. I always try to be around and there for him on those breaks. Or try to have someone there for him.

Today I had already put Lily down for her nap when James came out on his break. He was coloring WITH me (James still has a hard time with companion play). He was using a blue colored pencil and was coloring a car on one page while I was coloring a dog on the other page.

When the break is over we usually say "It's time to go back to work. Say 'bye bye.' Say 'bye bye Lily,' say 'bye bye Mommy.'" Today, when we said, "It's time to go back to work," James said, WITHOUT prompting, "Bye, I love you mommy."

He said "I love you Mommy."

He said it without being prompted or hearing someone else say it first.

He chained 5 words. FIVE words. Four months ago, my little boy could barely say 5 words. Now he can say five words in a row without stopping.

James has said "I love you" before but always after hearing it first. His longest chain before this was four words, "Turn on the TV" (which of course we did because he said FOUR words in a row).

But he also said "Bye." I have to say goodbye to my little boy 3-6 times a day but he has to say it to me too.

Oct 2010

After his midday session I always put him in his crib for a 'nap' which usually ends up being 'quiet time' for him cause he never really naps. I used to keep him with me and we'd sit on the couch and watch Shrek or something like that but we found that his evening shift went better if he had his quiet time. I have trouble checking on him at night because I just want to pick him up and bring him into bed with me but then Chris and I wouldn't get any sleep because we'd be too busy worrying that he'd fall off the bed. And if I brought James I'd want to bring Lily too and that girl never stops moving.

I tell myself that after these 3 years of therapy that me and Chris will make up the time we missed spending with him and it'll be even better because James will know what spending time with his mommy and daddy means.

And Lily. Those two little ones love each other and miss each other everyday. Maybe writing this will remind me to let them stay up late some nights watching a movie together or playing Phase 10.

Caught you!!

Lily trying to break into the Therapy Room to see
James

Hopefully all of that will happen. James won a "lottery" for a pilot program, the "Utah Autism Waiver" which provides about $30,000 a year for ABA therapy (http://health.utah.gov/autismwaiver/). It sounded too good to be true. It was. It turns out that if you accept the waiver you can have only the up to 15 hours of ABA that the state pays for, and can't supplement other needed therapy hours out of your own pocket. Parents have to choose between 5, 10, and 15 hours of ABA therapy per week. There are lots of assessments, and hopefully in the end they will be able to show the legislature how much better the kids who received 15 hours are doing. If we paid for James to have the other 25 hours that he needs it would throw off the results. And every kid that needs ABA should be able to get it. There is no way that James will be able to continue to learn and maintain the things that he has already learned with only 15 hours of therapy a week. He already started a year after the recommended starting age and has a lot of compliance issues that we are trying to work through. We have chosen not to participate in the waiver program, so we are back to looking everywhere for ways to pay for his therapy.

But you know what, this means that some other little kid will have the opportunity to learn. There is another mom out there who might be able to hear her child call her "Mommy," something that she has been waiting so long to hear.

James with his two favorite therapists on his 3rd birthday

It was nice to not think about having to move for a month. Maybe we won't have to in the end (though I am cursed with "Grawe Luck" which is bad luck (my maiden name is Grawe)). I wish that my son's future didn't depend on money. I wish I could pay my therapists more or be able to give them benefits so that James didn't have to lose someone special and then have a new one come into his life every month.

I remember one day, before James' diagnosis, when I was sitting at the computer and Lily kept saying, "Mommy, mommy, mommy, mommy" over and over and I wondered if James would ever do that. I remember telling Christopher when we started ABA that I hoped there was a day when James would do that. "Bye, I love you mommy" isn't the same thing, but for right now it works.

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The Reader's Digest Bio of Our Family

The Heuer Family, April 2012

I'm Ginger and this is our family. Chris, age 29, me, age 29, and our twins Lily and James, age 4. I thought it was weird to have a blog titled "The Heuer Family" but not tell anyone who we are.

Chris and I met in 2003 in the BYU Marching Band, started dating in 2004 and got married in 2007. About 2 years later we got our puppy Gizmo and about a year after that we had our twins, Lily and James. Lily is a family name on Chris' side (plus I've always liked the name), and James is Chris' middle name (so their names have nothing to do with Harry Potter). We recently got a puppy named Tonka for Lily. She takes great care of him and he is her pride and joy.

Chris graduated from BYU in April 2013 with a degree in Computer Science. I stay home with the twins trying not to lose my mind running a therapy program.

We live in Chris' parents' basement in Utah- Utah being a state that doesn't require insurance companies to cover autism treatments, it leaves all of James' therapy to be paid for on our own. We don't know what's going to happen next week but we're trying our hardest to find resources to pay for it.

Right now, we're trucking along, working our hardest to give James what he needs and make sure Lily feels important (she takes her responsibilities as a puppy mommy very seriously). I can't say how often I'll update, blogs always seem so touchy-feely to me and I am so not like that. But I'll try.